• Skip to primary navigation
  • Skip to main content
  • Skip to primary sidebar
  • Skip to footer
Donate now
  • About Tiny Tickers
  • Media Centre
  • Contact Us
Tiny Tickers

Tiny Tickers

Donate now
  • Support & Info
        • Support & Info

          Wherever you are on your journey, we’re here to offer the support and information you need.

          Find out more
        • What is Congenital Heart Disease?
        • Family Support
        • Are you pregnant?
        • Are you pregnant?
        • Just had a baby?
        • Has your baby got a heart defect?
        • Think HEART
        • Bereavement
        • Useful Resources
  • Professionals
        • Professionals

          We are here to help healthcare professionals improve the detection and treatment of congenital heart defects.

          Find out more
        • Sonographer Cardiac Training
          Our trainer, Niki, with sonographers from Russell Hall Hospital
        • Training services
        • Tiny Tickers' Yorkshire Sonographer Training Project to detect heart conditions
        • Training Resources
        • Cardiac Resources
        • The first Tiny Tickers funded pulse oximetry machine, at Good Hope Hospital
        • Pulse Oximetry Resources
        • Think HEART & Think 20
        • Resources Order Form
  • Get Involved
        • Get Involved

          Whatever your skills and interests, there is a way for you to make a difference to babies with heart problems.

          Find out more
        • Donate
        • Donate
        • Give a gift in your will
        • Our Appeals
        • Challenge events
        • Corporate Support
        • Fundraise
        • Share Your story
        • Play our lottery
  • Blogs and News
  • Your Stories
  • About Tiny Tickers
        • Our Work
        • Our Plans & Ambitions
        • How We Are Funded
        • Meet Team Tiny Tickers
        • Join Our Team
        • Our Values
        • Tiny Tickers’ Annual Reports
  • Media Centre
        • Brand Guidelines
        • CHD Statistics and Research
        • Family Stories
  • Contact Us
You are here: Home / Blog / The blame game

The blame game

18th September 2017 in BlogParents Blog

Elijah was my first child. I never knew what to expect, I had read the books, the blogs but what happened was not in any of them. It wasn’t discussed in the Ante Natal Class, or retold by friends who had children. Why? Because it never happened to them. When I went into labour, I didn’t really know what was going on but 8 hours later I was holding my first son in my arms. 12 hours later I was in a side room in my own with my baby down the other side of the hospital fighting for his life.

He had ‘dusky episodes’, where he went purple for a matter of seconds and then was back to his normal colour. He was taken to be examined to NICU. Upon examination, they discovered he had a heart murmur as was admitted. 6 hours after admission he had a scan and it was discovered that he had Tetralogy of Fallot a congenital heart disease that involved 4 structural abnormalities including a hole in the heart, and a narrowing valve which leaks back deoxygenated blood which was causing his dusky episodes. 24 hours after giving birth my world came crashing down around me as I sat on the hospital bed being told my son’s heart was working correctly. This was the first time I have ever heard of CHD something that was now possibly the biggest part of my life, my son’s life.

Again, and again I was asked if my scans during pregnancy were okay, if the pregnancy was ‘normal’. Yes, it was suddenly I was feeling like this was my fault. After all it was me that grew him, delivered him. Family history was examined and statistics were given to us then came the even more crushing blow. To ensure Elijah had a ‘normal’ life, for my baby to survive he would need life threatening open heart surgery before 1 year of age.

For those 6 months leading up to surgery we both played the blame game. Was it something I did during pregnancy? Was it Greg’s family history? The fact he smoked? It was hard to not blame myself and the guilt I felt was immeasurable. I resented others having healthy babies, and not having to go through this. we were so un prepared, we didn’t know anyone who had to go through this. I became obsessed with reading success stories, surgery stats and I was preparing myself for the worst. But because I knew it was coming, I could prepare myself. I could do the research, imagine the outcome no matter how hard it was to come to terms with. I didn’t have this when we received a diagnosis, and that’s what made it all the harder.

Until I had a child with CHD, I didn’t know anything about it, it didn’t even come into my head to even consider it when I was pregnant. Now, I know how important the work of Tiny Tickers is in detecting CHD in pregnancy. We were lucky that Elijah was in a hospital setting and a nurse took him to be assessed. The episodes are so quick you could have missed them, but they were a warning. A warning that got a diagnosis that was hard to accept but it saved his life. It could have been a very different story if we were sent home. We may have missed them as we didn’t know what we were looking at, and we may not be here on Elijah’s third birthday.

I decided to share our story in hope to raise awareness. It is so important to recognise the signs of heart failure, and to make sure the heart is properly assessed during the twenty-week scan. I always imagine if I would have been able to enjoy my pregnancy if indeed Elijah’s CHD was picked up on before birth. I cannot answer that as it didn’t happen. But what I do know from being a mum of a CHD baby is education is the key. It is our biggest weapon. We must learn as much as we can and share it far and wide so we all know the signs. Maybe then, we can all be prepared.

For more information please check out Tiny Tickers ‘THINK HEART and THINK 20’ campaigns.

  • Click to share on Twitter (Opens in new window)
  • Click to share on Facebook (Opens in new window)

Related

Primary Sidebar

Blogs

  • From the Sidelines to the Finish Line
  • The Great North Run: a congenital heart defect hasn’t stopped me running it – twice!
  • Tube dependency – our story
  • The Hebridean Way is “mostly flat”
  • The journey of a heart parent
See all Blogs

Your Stories

  • Transposition of the Great Arteries: Ivy’s story
  • Coarctation of the Aorta: Callan’s Story
  • Francis’ Story
  • Harrison’s Story
  • SVT and Aortic Stenosis: Arthur’s Story
See all Your Stories

News

  • Tiny Tickers supporter to run, swim and cycle 473km to help babies with serious heart conditions
  • Make Some Noise for small charities!
  • The Congenital Heart Disease Priority Setting Partnership: a national strategy to address priorities for children and adults with CHD
  • Tiny Tickers places its 500th pulse oximetry machine
  • Make Some Noise for tiny hearts
See all News

More about...

3vt (1) 20 week scan (1) Adult CHD Stories (6) ASD (13) AVSD (8) cardiac (1) Coarctation of the Aorta (37) collapsed aortic valve (1) congenital heart defects (3) congenital heart disease (3) Congenitally Corrected Transposition (4) Critical Aortic Stenosis (4) Double Outlet Right Ventricle (5) Ebstein's Anomoly (2) hypoplastic aortic arch (3) hypoplastic left heart syndrome (8) hypoplastic right heart syndrome (2) Loss (24) Mitral Valve Regurgitation (1) nominate (1) Parents Blog (15) Patent Ductus Arteriosis (3) PDA (2) pulmonary atresia (6) pulmonary stenosis (2) Pulmonary Valve Stenosis (2) research (1) shone's complex (1) sonographers (2) sonographer training (2) support (1) Supraventricular Tachycardia (3) SVT (1) TAPVC (1) Test for Tommy (5) Tetralogy of Fallot (22) tiny hearts (1) Total Anomalous Pulmonary Venous Connection (TAPVC) (1) transposition of the great arteries (45) tricuspid atresia (2) Truncus Arteriosus (4) Vlogs (2) VSD (40) win (1) yorkshire (1)

Footer

  • Facebook
  • Twitter
  • Instagram

Make a donation

Help us provide a better start for tiny hearts. Make a single or regular donations to help babies with heart defects have a fighting chance.

Donate now

Subscribe to our newsletter

You can change your email preferences at any time. Read how we keep your data safe in our Privacy Policy. 

  • Accessibility
  • Privacy policy
  • Terms and conditions
  • Fundraising Complaints Policy

© 2023 Tiny Tickers • Registered Charity No: 1078114

 

Loading Comments...
 

You must be logged in to post a comment.